Background: While treatment advances have dramatically improved the life-expectancy of people living with HIV (PLHIV), a number of important needs remain. We conducted an international survey of PLHIV to explore the impact of living with an HIV diagnosis on outlook and aspirations; rate the impact and sources of emotional support at diagnosis compared to today and assess the extent of disclosure.
Methods: Qualitative in-depth interviews were performed with PLHIV & partners to identify key hypotheses. A steering group developed the study questions which was fielded online from November 2016 to March 2017 in nine countries. A mixed sampling/recruitment approach was used to ensure a broad cross-section of PLHIV. Respondents were screened via telephone interview prior to accessing to the online survey instrument.
Results: As of January 2017, 819 PLHIV had been recruited. 20% were women, 32% age ≥ 50 years, 11% recently diagnosed, ≥ 80% reporting > 1 co-morbidity. 90% believe their quality of life will improve with advances in treatment though 26% tend not to plan too far ahead into the future because of their status. At time of diagnosis, 26% did not receive any emotional support/guidance from their health care provider (HCP) with 48% seeking support from a close friend. In the last 12 months, 75% continued to experience some level of stigmatisation with social (20%) & self-stigma (28%) very/quite often reported. 63% believe that improved education of the general public would help with this while 25% feel that better training of physicians, nurses and other HCPs would reduce stigma in the healthcare setting. 93% have disclosed their status to their primary care doctor with main drivers being the acknowledged need to keep them fully informed and avoiding drug-drug interactions.
Conclusions: In this large international survey, PLHIV believe that advances in treatment will improve their quality of life. Support from HCPs at time of diagnosis is not always provided. Widespread stigma is still experienced with education of public and HCPs seen as potential remedies.